Kellie's Blog

The role of hope in educating my son with autism

Here is a speech I gave this month to educators and community service agencies on the role of hope in raising our son with autism. With support from a social worker and his anxious parents, Connor will be moving into his own apartment next month, an unbelievable feat.Connor with his new Godzilla shower curtain

My beautiful son Connor was diagnosed with autism (PDD-NOS, to be exact, which stands for Pervasive Developmental Disorder) at age 4. He was still beautiful the very next day, however, I knew that the world would view him in a markedly different way. The psychologist who gave us the diagnosis said he would never read, never write, never finish school, never leave home. A barrage of “never’s”, seared onto my brain. I like to think that he meant well, that he just wanted to manage our expectations. But he didn’t need to be so definitively cruel.

We were sent to a new planet that day, with no map and much conflicting advice. Planet Autism is a secluded, insular place. You check in, but only with a diagnosis, and you can never leave (but there are no mirrors on the ceiling or pink champagne on ice).

Before Connor was two, I knew something wasn’t right. My doctor said he was just slow to meet some milestones. By age 2 and a half, we were sent through a round of tests. For the EEG, they attached electrodes to my three-year-old’s head, and he freaked out, as any self-respecting toddler would. After 20 minutes of screaming, the hospital said we’d have to reschedule, at which point I turned into a mommy tiger, crawled onto the hospital gurney with my son and sang to him for 10 minutes before he settled and fell asleep. The test revealed nothing.

There was no hope in our house. All we felt was despair. In my case, crushing depression invited itself in shortly afterwards. Connor’s father and I divorced, and we thrust the children into the strange world of two households. This is hard enough for a typical child, but it was murder for poor Connor, who would scream every time he left me.

We met with the Autism Resource Centre’s wonderful Executive Director Theresa Savaria. She was warm and practical. Unfortunately, the waiting list for help would be two to three years. We met with the School Board and they kindly informed us that he would be placed in the primary alternate program for kids with IQs of less than 50. I knew in my bones that my child was higher functioning than that, but with virtually no verbal skills, there was no choice. The children in his class suffered from a range of disabilities. Some would never speak or lift their heads, but that didn’t necessarily define their IQs. I wondered if some of them were just in the class because they couldn’t express themselves. I wept in the car every time I went to help the teacher.

By age 7, Connor had miraculously gained a lot of words, and was placed in the primary adaptation stream. Hope began to flower. He had good but not gifted teachers. On parent-teacher night, they would talk about coping strategies and how to keep Connor calm, never about his potential.

And then two miracles happened. Connor got into the Autism Resource Centre, and a talented young woman by the name of Amy Ewart started working with him. She taught him how to play games and take turns, and manage his own reactions. One time, Connor told me to breathe with him when I was freaking out over my broken printer. Another time, he grabbed my arm and squeezed it so hard that I gasped. (People with autism can respond to deep pressure when they are emotionally out of control.) It’s safe to say that this child was teaching me many life lessons, not the least of which was patience and a sense of awe at how perceptive he could be.

The second miracle happened when an educational genius entered our lives. Her name is Corinne Toews and she blessed Connor with her teaching for almost five years. She taught the primary adaptation program at Davin School and then was moved to Rosemont School. Although that was a 40-minute drive in traffic each way, we chose to have Connor move to her new school. My husband took Connor there himself for four years so that he could remain her pupil. Best decision we ever made.

Corinne taught us as much as she taught Connor. She taught pride, how to believe in himself, how to respect his unique intelligence, how to give up gracefully the obsessions of his youth – like endlessly cutting dinosaurs out of paper and waving them slowly around in front of his eyes.

She sat beside me when big tears splashed on a recent report as a school psychologist said that Connor’s abysmally low social scores showed that he was “socially out of it”. It was only later that I become white with anger that he would use such language in his own head, never mind with a parent.

But hope soldiered on, and Connor learned how to read at age 11, with major help from the amazing Corinne Toews and minor supporting roles from his parents and step-parents. He can write too and put slides and music together. (You can see his YouTube channel ConnorGodzilla.) People with autism generally have an obsession. Connor’s is Godzilla and dinosaurs.

Connor 22 now. When he was 19, my husband Jay asked him if he wanted to learn how to drive. Connor said, “Oh no, Jay, I have no judgment.

Jay said, “Well, adults who don’t drive take public transit – you know, the bus.”

Connor said, “Oh Jay, I don’t know how to do that.”

And my dear husband said, “Neither do I, but we’re going to learn.” The two of them pored over bus routes and took the bus all over this fair city. Eventually, Jay would put Connor on the bus, drive to the next stop and pick him up. Then he graduated to transferring buses, again under Jay’s watchful eye. If there is a single moment that defines why I love him so much, it’s the hours and hours and hours he spent giving this child the gift of independence. Now Connor takes two buses to work each way, goes downtown by himself when he wants to go to the library or have a hot dog, and feels very proud of himself.

Connor’s father Don has also been a wonderful force in his life. Don has pushed Connor more than his Mommy has, especially with sports and learning about money. Don has taken Connor to the dinosaur museum at Drumheller more times than an adult would ever want to go. We have managed to hammer out similar rules in both households to provide as much consistency as possible.

A year ago, through the adult campus program, which gave Connor experience at several workplaces, he was offered a full-time job at Sarcan. It is hard work, standing all day and counting cans and bottles, and endless cleaning. He has saved $16,000 since June 2013. Next month, he will move into his own apartment – with support from social workers and his family. He is anxious about it, but excited too. He has a new Godzilla shower curtain from his aunt, and wants a kitten. He bought all his own furniture last month, and paid cash.

If anyone had told me – even a few years ago – that Connor would announce that he’s off to have lunch and go to a movie on his own, have a job, and move out, I would have snorted with disbelief.

This is not to say that the challenges have disappeared. Connor has no friends. He has difficulty restraining himself on the boundary front with women at times. There was an incident with a female postal worker a few years ago where he stuck his hand up her shorts that horrified us and made the dangers of self-control issues very real. He will need a structure of support for the rest of his life. But without being an ostrich, these days I tend to focus on what he can do more than these things. He is charming when he wants to be, funny and very creative.

Having a son with autism has led me to view people who seem odd in a completely new light. We all have peccadilloes, even us “typical” folk.

It truly takes a village to raise a child. All of you in this room play a vital role in helping to raise all children. During the week, you are with our children more than we are as parents. Your passion for helping them to realize their potential, or your boredom at yet another day working with demanding kids and their parents makes a difference – for good or for bad. You are human, and you have your own personal and professional challenges. Some days, you might wonder if you are even making a small difference. You are. Good or not so good, you make a difference. You give hope or destroy it with every interaction, especially when you are alone with that child. I remember all of the doctors, social workers, teachers, school board officials, testers and autism experts who have worked with my child. I would give a B minus average to them, which includes a failing grade to a few.

Corinne Toews is on another planet – and A+ is far too low a mark for her. I cannot thank her enough. She joined us on Planet Autism, and turned our grey world into a full-colour masterpiece, painted by Connor himself.